Monthly Archives: November 2016

One of the things I am most excited about with my new job is the chance for me to do new things. Some of the things are the same as things I would do if I was working at school (with less actual cutting things out), and some of them are excitingly new. And one of the things I am most excited about (I try not to bounce too much) is being allowed to go to places. When you work in a school, that’s it. That’s where you go. When you are an intervention teacher, support staff, part time, you don’t even get to go on school trips, not very often, anyway. A course? Don’t be daft.

And last Thursday I did something entirely new. Not only did I go to That London (ok, that’s not new, I am getting used to doing that for work purposes – everyone stands on trains, you know, eyes closed, like sleeping horses, or plugged into some sort of escapist device, so that they can pretend they aren’t really there), but I attended an event that had only, on the surface of it, a very tenuous connection with teaching and learning. And I was allowed to go. I didn’t even have to beg.

It was held in a rather swish place underneath The Guardian offices (there were glass walls and a sort of cafe thing where they sold healthy looking drinks made out of grass – I may be exaggerating, I didn’t stop to stare like the country bumpkin I actually am, I was far too intimidated – and important looking men wearing cords and man bags and women in jersey dresses strode about in clumps being important, and glided up and down the escalators) and it was attended by Creatives. And me. It was about design and disability.

What was interesting about the delegates, apart from the glamorous sounding jobs they do, like TV executive and journalist and comedian and marketing, is, unlike a gathering of teachers, quite how united they were. There was no loud proclamation of woes, no paroxysms of rage at the latest policy decisions, absolutely no uniting whisper of Ofsted, and no argument about inclusion or whether or not it was a good or bad thing or, even, possible, or dead. It was refreshing.

I came away with many things, not least that I wasn’t, perhaps, as big a fish out of water as I first suspected, when I stood in the coffee bit (I don’t drink coffee) and was too scared to speak to anyone. There, gathered in the underbelly of a great glass monster were, indeed, people like me. There were people who were disabled. There were people who loved someone who was disabled; I wondered at one point, when I chatted to my lovely seat-neighbour, who told me that she was there to support one sister and honour the other, how many of us had a close family connection. There were people who wanted to make a difference and who wouldn’t stop until they had.

And despite the talk of markets and commercial sense (I mean, when the disabled population is as big as it is and getting bigger with an ever-aging population – like the woman said, disability will affect us all), words I have heard so little of lately were talked of loud and long. I wrote some of them in my notebook. In capital letters, too.

Responsibility.

Duty.

Fairness.

Respect.

Dignity.

Choice.

Honesty.

Belonging.

Humanity.

Co-design.

Moral obligation.

These things made me think, and think hard, about the difference between us teachers, as a profession, and our creative counterparts in other industries. Because, make no mistake, we are a creative profession, and what’s more, we work at the immediate end, at the doing part, not the planning stage. We like to think that we have the moral high ground. We certainly don’t do what we do for the money (but maybe for the holidays – the holidays are great). But do we truly, do we honestly, as a united profession, accept the world as it is, rather than as we would like it to be?

We might accept, on the face of it, that when you design something well, like a shopping trolley, when you make it good for a disabled person, you make it good for everyone. We might pay lip service to the idea of removing barriers, in the same way that we drop the curb so that not only the wheelchair user but the mother with the overloaded pushchair can cross the road. We might love to have the child with Down’s syndrome in our school because, you know, they are all so loving, so compliant, no trouble at all and doesn’t it make us look good when we are all doing a spot of Makaton in assembly.

But while advertising, and product design, and TV shows and banks might be coming round to the idea that we are a diverse people, and that means more than gender, race or class, and that building something, making something, selling something that works for everyone not only makes commercial sense but is the right thing to do, why are we, the workers at the sharp edge, the team of formers of the next generation, the ones who can’t? Why is it that we can’t seem to design a school, a worksheet, a lesson or, even, a behaviour policy, that works for everyone?

Why is it that, in that film, the Yes You Can film, the one that introduced the Paralympics, that the person, the one person who says, ‘No You Can’t,’ is a teacher? Is that true?

Is that really who we are?

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Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.It’s been a funny old six weeks or so. Actually, scratch that. It’s been a funny old few months. Since the summer really, and the political landscape in Europe was thrown into turmoil by a vote by the British to leave the European Union. Since that day, the world feels as if it has changed. The Tory and the Labour Parties convulsed in a sort of headless chicken state of shock. People on trains in central London talked to each other. And now, like some sort of seismic through-the-looking-glass aftershock, we have a reality TV star poised to enter the White House as President of the United States of America, and a former Chancellor of the Exchequer storming to victory as the Nation’s Sweetheart by dancing on live TV. It’s all gone a bit, well, weird.

It’s been a funny few weeks in the Down’s syndrome parenting community too. At the beginning of October, a beautiful documentary, made by an intelligent mother, aired on BBC Two. Before it was even broadcast it was up for criticism. How dare this mother tell the world that she loves her son, regardless of chromosomes, or of the medical profession’s definition of normality. How dare she make an argument based on emotion, based on love? How dare she make women feel guilty? (Because of course, when it is a woman’s right to choose, it is she and she only, who bears both the responsibility and the blame.)

All those things I am so tired of hearing: too emotional, too close to the subject, unrealistic, were laid at the feet of Sally Phillips. How dare she step out of the box that society had provided for her and ask questions; especially those that made people feel uncomfortable? She should be stopped. The BBC should never have allowed it, proclaimed angry journalists in national newspapers and on the radio.

And here we are again. A beautiful film, made to answer the question of an unsure mother, ‘Dear Future Mom’, to reassure her that, even with disability in her life, she could still be happy. She could still love her child and her child could also, in their turn, be happy and love her in return, has been banned on French TV. Two women felt guilty and complained. And BOOM. Gone.

It’s as if the public narrative, that life with disability, with Down’s syndrome, cannot be challenged. That if you say, ‘hey, actually, it’s OK’ you are breaking some unwritten rule, and you will be told, ‘it’s alright for you, your son is high functioning’, or ‘your personal wealth makes it all seem better than it is’, or ‘you are ignoring all the people for whom it is not OK’. It’s as if there are acceptable faces of disability, you know the ones I mean, the ones who overcome the obstacles to achieve great things, and those whose faces just don’t fit.

The thing that gets me, though, is that it doesn’t stop there. There are any number of things that, today, we just don’t seem allowed to say. In the same way that mothers like me, especially if they have a bigger platform than I do, aren’t allowed to advocate by asking questions that might make someone feel uncomfortable, as if the making of my child, and others like him, into monsters in order to allow us to carry on further down the road to genetic selection, without being branded a Pro-lifer, we aren’t allowed to suggest there might be problems with the EU, or the benefits system for fear of being branded a racist, or a fascist or any other sort of Bad-ist.

As teachers we have to be careful too. I sat in a staff meeting about a year ago where we talked about social media and how we use it. As well as the warnings against ‘friending’ past students (or any other young people) or parents, we were warned to stay off subjects where we might have opinions, like politics. (Ooops, bit late for me, then!) And then there are parents.

One of the most important sets of people we work with are parents. Getting a good relationship going with them (us) is one of the most effective ways to improve educational outcomes for the children we teach. When parents trust us (them), they (we) support the school in a hundred million little tiny ways that make all the difference. When these parents have children with SEND (us, them), a positive relationship is transformative.

But the thing is, not everything in the garden is rosy. Not everything is as simple as that. Some adults are difficult to deal with, especially when you are only in your early twenties, not long out of childhood yourself. I’ve not had a parent physically threaten me (yet), but I know teachers who have been. In my career, I’ve been shouted at by parents who have had one too many pints down at the local. I’ve been intimidated and complained about, the door to colleagues shut. I’ve had people say things about me that aren’t true, and experienced and witnessed behaviour from adults – including the dreaded Pushy Parents – that essentially harms their children.

Now personally, I tend along the systems line. I have met very few people who deliberately go out to hurt others, or to do a bad job. On the contrary, I have met many, many, many of them who are trapped within systems that force them to behave in particular ways. Teachers trapped by the conflicting demands of a conflicted education system, that on the one hand wants high academic standards and on the other fluffy bunnies. TAs bound by their contracts to one child, their job depending on them being needed. SENCOs caught on the ever turning wheel of administration, paperwork and meetings. Parents stuck in in the black hole of poverty, or out on the playground, unwilling participants in the rising tide of anxiety brought on us by a knowledge economy ruled by the market place.

When you look at it like that, it isn’t fair to say you are either good at what you do, or you aren’t. Taking responsibility for the job that you do, either as parent or teacher is one thing; dishing blame about to other people in a personal way, is another. You know your own context – but you don’t know theirs.

Because when we stop saying it out loud, when we stop telling the wider world the realities of the job – when it is OK and when it isn’t – like Down’s syndrome, when there is only one story that is acceptable to tell for fear of provoking offence or guilt, what we do is raise the barricades. We hunker down, and the battle commences; the victims of which, neither winner, nor loser, are not us, but them.

Now, if you don’t like swears, I don’t recommend you watch this video. I recommend you read this blog post, which makes the same point, but without so many swears.

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One of the things I get asked, every so often, is what Sam’s mental age is. I understand the question, I really do. It comes from a desire to understand him, to give the asker a framework upon which to build a relationship. All of us have had contact with children, in one way or another, at some point in our lives. When we talk about a three year old, we have an image in our collective imagination. We think of Thomas the Tank Engine, or digging and making mud pies in the garden. When we talk about our ten year old, we know it means Minecraft and stories, falling out of tress and a growing sense of the world around them, and their place in it. To ask someone’s age is a way to understand a person, or an attempt at it, anyway.

But the thing is, when I am asked this question about Sam, I can’t really answer. He is fifteen (not sure how that happened), and in many ways he is typical of his age group. He plays terrible music far too loud. He slams the bedroom door. He is slowly and steadily eating us out of house and home. He is that weird mix between independent and vulnerable. He says, and does, things that are both annoying and endearing, thoughtless and hilarious all at the same time.

In many ways, though, he is anything but. It is terribly easy, when one is engaged in a bit of Down’s syndrome advocacy, to infer that there are no real, no substantial differences between his development and that of his typical peers – but that wouldn’t, to be totally honest, be honest. It’s a complex and contradictory thing to try to explain (thank goodness I like a bit of nuance and paradox), but I’ll give it a try.

He likes loud music, but it could just as well be the musical times tables he’s had for years, or Christmas tunes (I have to admit they get on my nerves a bit when they are blaring out over the July garden), as the latest pop tunes to strut the hit parade, by bands/artistes I don’t know, and have no desire to know either.

He is interests in cars, but he doesn’t want a poster of a red Ferrari on his wall. He’d rather play with his collection of toy lorries and line them up in intricate patterns on the floor. When you ask him what he wants to do when he grows up, or who he wants to be, when he says, ‘Eddie Stobart’, it isn’t clear whether he means he wants to be a lorry driver, or star in YouTube video and sing the Eddie Stobart Twelve Days of Christmas.

That’s the funny thing about Down’s syndrome. In many ways it’s a magnifier, a slow motion lens that allows you to see the details you would otherwise miss. It throws the things you already half-knew, the thing you felt in your gut into to relief; you can get them out and examine them in detail. When I look at my other children, my younger two, or I think about the classes I have taught over the (ahem) twenty or so years I have been a teacher, I can see that they, the typical and the not so ordinary, are not so different after all – but not in the way you might first think.

At first, when you meet them, the massed ranks of Year 4, you could reasonably assume that they are broadly similar. For a start, they are roughly the same size. They (usually) fit the furniture. The stories we tell them appeal to their age group, the things we teach them fall into a similar patter, year on year.

And yet, when we get to know them, just like Sam and my younger two, you realise that the boxes you had assigned to them don’t quite fit. Lego, and interested in girls. Voracious reading, disappearing into the imagination, and an interest in the world that surrounds; endless chatter, but no capital letters or full stops when it is written down. A desire for independence, with cuddly toys and bedtime stories.

I’ve been looking at the way we assess children in school for work, you see. I’ve been thinking about how we have moved away from the broad brush description of development that the levels used to be and into an age of expected standards for year groups, regardless even, of the month of birth.

It’s a difficult thing to describe, a child’s journey through a national curriculum, in the same way that a mental age is an inadequate way to talk about my son, because despite their similarities (and yes, we are more alike than different), they don’t all meet developmental milestones all at the same time and all int he same way on one morning in the May when they are seven, or ten years old. And the new descriptors in the Rochford Review, pushing the possible standard met in Year 6 to six, for me, rather begs the question of whether the expected standard is to be, well, expected.

And I suppose this is the thing. It is all well and good to summarise, to quantify at the end of a school career (or at specified points within it – and for Sam, this is once a year at an Annual Review), what a child can do. But, accountability aside, when we turn the language of progress into one of expectation related to age, and there is more to be said about what a child cannot do, about the way that they have not met expectations, I am disturbed.